Tampa Fibro Friends

February 19, 2012 3:00 PM - 7 attended

Tampa Fibro Friends Meeting changed

Morsani Center for Advanced Healthcare (map)

Selected By: Laura

DUE TO MY DAUGHTER BEING IN THE HOSPITAL, I WILL NOT BE TEACHING THE CLASS ON FIVE WISHES. IT IS POSTPONED UNTIL THE NEXT MEETING. MICHAEL WILL BE RUNNING THIS MEETING AND HE DOES AN EXCELLENT JOB. PLEASE COME AND ENJOY THE MEETING WITH MICHAEL.

Join us Sunday afternoon for the opportunity to get your "Five Wishes" and you may also purchase more for family members. The cost is $1.50 each. That is our cost.

WHAT IS "FIVE WISHES?"

Five Wishes is the first living will that talks about your personal, emotional and spirirual needs as well as your medical wishes. It lets you choose the person you want to make health care decisions for you if you are not able to make them for yourself. Five Wishes lets you say exactly how you wish to be treated if you get seriously ill. It was written with the help of the American Bar Association's Commission on Law and Aging, and the nation's leading experts in end-of-life care. It's also easy to use. All you have to do is check a box, circle a direction, or write a few sentences.

I have an instruction manual to assist with questions when filling out your Five Wishes. Please come and learn about this new alternative to a living will.

FYI- If you are struggling with SSDI please email or call me. I have a lot of information; I was just approved in June. Also, there is a conference in Orlando, The Family Cafe, this June. Several members plan to attend, so carpooling is an option. It is free, and you can sign up for a lottery for a free hotel if you chose to spend the night. The conference will be held at the Hilton this year. They will have group rates available after the lottery for the rooms. It is the weekend of June 15-17. This is an non-profit organization created to assist people with disabilities. Besides all the guest speakers, there will be representatives from SSDI, Medicare, Medicaid, and most all the state funded assistance programs. I went last year and I was amazed how much is out there that I was not aware of. The web site is www.FamilyCafe.net.

Arrival time is 3:00 P.M. and the meeting will formally begin at 3:30 P.M. This thirty minutes gives members a chance to chat, mingle, help themselves to something at the coffee/food table. We plan to officially start the meeting at 3:30 P.M.

Our meetings have slowly grown in numbers and we now have implemented a new policy regarding cross-talking. Basically, please don't chat with your neighbor while a member is speaking at the meeting. As obvious as this rule sounds, members continue to chat. We have agreed that if there is side-chatter, those persons will get a lot of " Ssshhhh. directed their way. Thank you in advance for your assistance with this.

As always, please RSVP for all meetings. If any member goes more than three months without attending a meeting, he or she will be removed from the group. . If you RSVP "yes" and find you cannot make the meeting, you have up until two hours to change your RSVP to "NO". This is important so we can be prepared for the correct number of members attending.

Remember, we are a closed group due to the sensitive nature of our purpose: To provide a safe place for people who suffer from FM/CFS and to receive support that otherwise cannot be found in our community. Only we who suffer from this disorder can fully understand what it is like to live with the various symptoms that comes with having FM/CFS. Also, this group has created the opportunity to learn, support and be supported in a loving environment. Please take advantage of what this support group has to offer. Also, we have an abundant amount of information on our website so take some time to interact with our site. Furthermore, it would be great to have all members click on the message boards and add any information that may help other members. Read some of the articles in the "Files," or list physicians you have had experience with and let us know if they offered good medical treatment or not. These sections have been created to assist all members, and for members to use this mode of communication to learn and help others too.

Sincerely,

Laura Roza, Organizer
direct email ([masked])

Laura Lee
This is the book I mentioned during the meeting that gave lists of the tests you should have for a proper diagnosis of Chronic Fatigue Syndrome: Alternative medicine guide to chronic fatigue, fibromyalgia & environmental illness / Burton Goldberg and the editors of Alternative medicine digest.

Posted Monday at 7:14 PM
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7 attended

RSVPs closed

5.001 (1 ratings)

Event Host

Laura
Organizer, Organizer
Laura Lee
Fibro Friend
Linda Hug
Michael Miller
Assistant Organizer & IT Fibro Friend, Co-Organizer
Laura Squitieri
Hostess Fibro Friend
Beverly Baker
Fibro Friend
Linda
Assistant Fibro Friend
Teri
Treasurer - Fibro-Friend, Co-Organizer
Marilyn Essert
Fribro Friend
Jacqueline
Fibro Friend-Assistant, Assistant Organizer
Patricia Solomon
Fibro Friend
Angel Wilds

Tampa, FL

Founded Nov 22, 2008

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Meet withlocal people who live with Fibromyalgia/Chronic Fatigue Syndrome (FM/CFS). We discuss, share, laugh, and conquer the misconceptions regarding these disabling conditions of FM/CFS and other diseases that may arise from FM/CFS. This group has been set up to be a "closed group" to create an atmosphere of security, trust, and comfort. Your spouse or significant other is always welcome to join you at our meetings if you wish. We have found that your support person will have a better understanding about you as well as what we do at our group meetings, therefore, it can increase the amount of support a member receives from his or her support person.

Our meetings are held at USF at the Morsani Center in a private room. We use a general discussion format at the meetings. What to expect for your first meeting? You will be greeted with our name tag box and asked to make a name tag for yourself. (This is one of our ways to recycle.) You may find a seat at our table that is set up in a large square so everyone can see each other. We have a coffee table that includes coffee, decaf, and hot tea. There usually is some kind of food to snack. We try to keep it healthy but you will see brownies come through now and then. You are welcome to bring your own drink if you prefer. The chairs in the room aren't too bad, but some members bring a cushion and/or a back rest. Please bring whatever keeps you comfortable. Although our meeting starts at 3:00 P.M., we formally sit down at 3:30 P.M. The thirty minutes is used to get the coffee table finished, chat with others, and mostly wait for members who are running behind. (This is almost expected with our disorder.) If we have a guest speaker it will be noted on the web site. Although we usually have a specific subject to discuss, sometimes the discussions take a turn to something else that comes up. We keep it pretty loose so to meet the needs of the members.

We meet the first and third Sunday at 3:00 PM. The months that have five Sundays we create a social event. They are a lot of fun and family and friends are welcome.

Although our membership is high, the meeting turn-outs are no reflection. We average between 12-18 members at most meetings. We all understand how difficult it is to get up and out of the house some days. If you are looking for a place that supports feeling better, then you will not want to miss a meeting. If you are looking for a group that mopes about problems then this may not be the meeting place for you. Please, do what you can to try out at least one meeting to see if you gain more benefits from attending than if you had chosen to rest in bed. You may be surprised!

FYI -After a new member signs up with our group he or she has up to three months to attend a meeting before being removed from the group. This rule also applies to all members; if any member goes three months without coming to at least one meeting, heror she will be removed from the group.

"It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power."
-- Alan Cohen